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Cancer Bridges Dot Org

2 Mar

Hello All,

Well, I decided to spend 10 more dollars that I don’t have πŸ™‚ (today was a very expensive “cancer” day, more on that later . . . maybe). The extra 10 was spent on a domain name that I am thinking of using in the future for the nonprofit that I intend to establish. I am thinking of the name Cancer Bridges – it would be: cancerbridges.org

What do you think of the name? Here is why the name appeals to me:

I have found firsthand that while there are many organizations raising money for a cure to cancer, there seems to be little available to the current cancer patient in the way of financial support. Don’t get me wrong, there are some really great organizations that provide financial assistance to cancer patients. But, these are very limited in what they pay and for how long. In many cases, the applications are exhaustive and, as I found out, funding was either not available (even though I qualified) or I was no longer eligible because I was no longer going through chemotherapy or radiation. I worked full time during chemotherapy. I also tapped into savings (naturally) and for most organizations, until you exhaust your resources, you are not eligible (I understand this). But, in my case, that meant that what qualified as the “treatment/eligibility period” was over – but, I was not able to yet return to work.

As a single person, I have my own unique challenges as well. But, it is is no walk in the park for anyone. And, while I have excellent health insurance, the costs of treatment (despite excellent coverage, are very high). Tack that on top of a period of time in your life when you are not working because you can’t and well, you see the picture.

I have learned so much this past year. I have learned how truly wonderful human beings can be. I have been inspired by so many and encouraged by so many. I have had mentors and formed great new friendships that will surely be lifelong and I am grateful beyond belief for all of that and for my incredible parents. I have also had to to be my own “cancer soldier” (in so many ways, way beyond what I would ever have imagined). And, in the future, I want to be a cancer soldier for others. When I am ready and able.

Breast cancer patients have a particularly challenging situation because your physical down time can go way beyond what is considered part of “treatment” (your treatment period being about the only time their is any financial aid available to a cancer patient – I mean it, American Cancer Society, Susan G. Komen, Beckstrand Foundation, Breast Cancer Solutions and many others – all fantastic organizations. But, all either limit their funding to the period of time you are receiving chemotherapy, cancer removing surgery or radiation or – they simply do not really have much funding available to be able to bridge the gap). Breast cancer patients who undergo mastectomies most often undergo reconstructive surgeries after “treatment”. This means additional down time and recovery and for some – complications. The point being, it just doesn’t wrap up the moment you are done with chemotherapy or radiation.

And, this is true for many cancer patients. It takes time to recover from chemotherapy and it can take a great deal of time to recover from radiation. With chemotherapy – it is all over the map – some people tolerate it better than others – some chemotherapy “cocktails” are more difficult than others to tolerate. And, cancer patients come in all ages, sizes, levels of health and have needs that go way beyond the “treatment” period. With radiation, recovery times are also all over the map – weeks, months – again, it all depends upon the dose a cancer patient receives, the area (how large) that is treated etc.

So, it just doesn’t end right when you finish your last day of treatment. I am still going through treatment. I have finished chemotherapy and radiation, but still have Herceptin treatments to complete. Then, assuming all goes well, I will be done with the cancer treatment phase. Still, for some reason, Herceptin doesn’t seem to be on the list of cancer treatments that give you eligibility for monetary aid (despite the fact that it knocks you out for a time afterwards and also takes a toll on your immune system). But, some women tolerate better than others and so perhaps that is why it is not on the list.

The other problem that I see (and have experienced firsthand) is simply that I did not find out about these organizations in time – there was no portal, no one providing information about the different resources out there. So, by the time I found out about these organizations (that provide aid for a limited period of time – in the beginning – it was too late. Plus, I probably would not have qualified at that time as I had money then. So there is a void out there and it is my intention to fill it, fix it.

Hence my idea of creating a “cancer bridge”. Two fold – 1) raise money for patients undergoing cancer treatment – and in particular, provide assistance during that void time and 2) create a portal – sort of a one stop center for finding resources.

I don’t understand it (although maybe I do), but, it seems to me that some of the organizations out there – all with the same goal of helping cancer patients in need – are competing with each other. At least, that is the feeling I had as one would never mention or inform me of another organization (even when their organization could not help me).

As a business owner, I know my market and I know all of the players in it. I can not imagine that cancer non-profits are some how unaware of other non-profits that are out there, ready and able to assist. But, for some reason, some of these non-profits seem to want to keep you with them – even if they can not help you – rather than send you to alternative resources. This is not true of every non-profit, but it certainly seems to be true of some – at least that is what I experienced. And maybe it should be your oncologist who simply provides you a list of the resources out there and the time frames for eligibility and what each resource can provide to you. Certainly, a law could be passed requiring this – it is already required that certain pamphlets be provided (these are created by the state) to breast cancer patients about their rights etc.

So, that is my goal – start up an organization that creates a portal for all of the wonderful, already in existence non-profits (with their time frames and eligibility requirements) and also find a way to bridge the gap between the treatment period where it is clear a person can not work and the period of time where, for example a breast cancer patient is unable to work because of reconstruction surgeries, or another cancer patient is simply not recovering from radiation treatment soon enough to go back to work (yet assistance may not be available to him or her).

Time to go to bed, have an early appointment tomorrow. So it is time for some shut eye. By the way, today was incredibly busy and eventful. Some good and some a bit rough. I don’t want to write about that now, I am looking ahead and looking forward. πŸ™‚

Please continue to keep me in your prayers and don’t be afraid to say hi here, leave me a comment. I always appreciate it.

Much love to you all,

L.

Cancer Bridge

24 Feb

So here is what I have been thinking a lot about lately – putting what I have learned this past year to good use. It has been a tough year to say the least. But, something I have never talked about here are the costs of cancer – that is the financial costs. I have certainly covered the emotional ones over the course of this year πŸ™‚ There are many organizations that are racing for a cure. And, I am so grateful to these organizations. Susan G. Komen is certainly one of the most known, but there are many other organizations that are out there raising money for a cure for cancer. However, what I have found is there are few that are out there raising any substantial funds to helpΒ present breast cancer patients – or cancer patients in general. There are resources for some aid. But, these are limited financially and in time and scope. For example, most monies for breast cancer patients (in fact, all that I know of) are limited to the time during which the patient is going through chemotherapy, mastectomy and radiation. Once you have completed those treatments you are ineligible for any aid.

From my own personal experience, well, that is really tough. I worked full time during chemotherapy because I felt I needed to to just not be focused on the cancer. And, because I don’t do well just sitting around. Yet, I could have instead, not worked and there were organizations at the ready to provide financial assistance to have made that an option. I knew this. But, what I did not know is that when I was physically unable to work, that these same organizations would not consider me eligible (even though my oncologist said I was too anemic, too weak from radiation etc to work) because I was no longer going through the aggressive part of the cancer treatment.

The unique problem with this for breast cancer patients (the fact that funding is not available to you unless you are currently going through chemo, surgery for a mastectomy, or radiation) is that 1) it can take months to recover from radiation as typically the area radiated is pretty large and 2) if you have a mastectomy then you are likely going to have reconstruction. Reconstruction can in some cases be done in one surgery and in other cases (in particular, those women, like myself, who have undergone radiation) two or more surgeries. These surgeries can take a month to two months each to recover from and you never know if there might be some complication that draws out that recovery time. The point is, that this period of time is not considered “cancer treatment” and therefore is not a period of time (even though you are definitely not able to work) that these organizations consider you eligible for aid.

So, while I still have to fight my own battle, I am definitely planning on doing something to bridge this gap.

First of all, there is just not enough done for women (and men) who are currently going through cancer. I am all for that race for a cure and I am, like I said, grateful for the many non-profits that raise money for cancer research. But, there is really a hole here – there are so few financial resources for cancer patients. And, those that are available are mostly very short term. As a single woman, living alone on one income, it is particularly challenging to bridge that gap. And, add to that my choice to run my own business – well, it doesn’t get run if I am not running. You get my drift.

I am so fortunate to have excellent health insurance and I am even more fortunate to have my parents to assist me. But, the costs are so incredibly high. And, there are so many other things to deal with – navigating your insurance to get the care you need and want and deserve, finding the right information, getting the resources you need while they are available to you etc.

So, while I know I can’t go out and do it today – as I have to be my own cancer soldier right now – I want to form a non-profit that will address these issues.

Don’t get me wrong, I have been given a lot of great information from the American Cancer Society. And there are organizations out there to help. But, there is just this big hole out there where there is nothing available to you after a certain point. And, by that point, most cancer patients have exhausted their resources and simply making co-payments can often be too much, let alone keeping up your insurance premiums. So, I was thinking of something that would bridge the gap between that period of time where there is really good help from some really good organizations and the time that they cut off eligibility (which is long before a cancer patient is back on their feet physically – especially breast cancer patients who face reconstructive surgeries that can keep you out of the work force for months).

So, I hope to be a cancer soldier for others – once I am physically up to it. For now, I am setting aside things, making notes and just creating a file for the things that I would want to be able to provide. I want to also create a portal for all of the organizations that are out there to help. I found out about many of these too late. There just isn’t anyone out there really guiding you and your focus is and has to be on just getting well, getting through the treatment.

Anyway, I just feel that I have learned so much this past year and that I need to put that knowledge to use. Otherwise, it is just another woman who gets diagnosed who is starting over at square one. Does that make sense? I guess what I mean to say is that while I have every intention of surviving and moving past this cancer, it would feel wrong not to impart what I have learned in this past year to newly diagnosed women. I don’t mean to sound all high and mighty, or arrogant. I just feel that I had to learn so much the hard way and that there needs to be so much more out there for cancer patients. Those of us battling the disease today want more than anything for their to be a cure. But, my cure, like anyone’s is dependent upon satisfying the financial realities of cancer treatment. And, these costs are so very high.

Anyway, the point is I want to do something to bridge the gap and I also want to simply connect all of these already in existence non-profits that do help cancer patients so that a newly diagnosed cancer patient can know what his or her options are early on so as not to miss out and to be able to make decisions based upon what is available to them (like I said, create a portal where a newly diagnosed cancer patient could go to find out what resources are available). I found out about most way too late to take advantage of these.

And, I hate to say it, but there is a definite presumption that as a breast cancer patient you are married and have a husband to take care of you. I have never been called Mrs. more times in my life than this past year. It is really odd. And, quite frankly more women than not – who I meet in treatment – do have husbands. But, still, that does not mean that there isn’t a financial crisis brought on by the treatment – both in the costs and the time away from work.

Well, I won’t be filing the paperwork to create a non-profit tomorrow. I still have to do my own battle. But, I am going to do something as soon as I am physically capable of doing it.